don’t give advice to people who are drowning

It’s clear to me that a lot of the advice offered to dementia care partners is given by people who have never cared with/for someone who lives with dementia and/or who don’t appreciate the challenges care partners face.

If they did, they wouldn’t make some of the suggestions they do. “Ask for help,” is a tip I’ve found on just about every Alzheimer’s dementia care website I’ve ever visited.

Imagine this:

A woman wades into the sea. She walks out from the safety of the beach. Suddenly the sea floor drops off and she gets caught in a powerful current. She starts to drown. People on the beach notice. A crowd of onlookers gathers at the shoreline. The crowd includes several lifeguards. Everybody watches as the woman drowns. “Call for help! Call for help!” Some of them yell at her, but no one, including the lifeguards, does anything. No one steps into the water. No one tries to save her. No one tries to help her save herself.

Ridiculous, right? A drowning person doesn’t need to be told to cry for help; she needs someone to throw her a flotation device. Even better, teach her how to swim in a strong current before she goes into the water. Most of us know when we’re overwhelmed. Most of us are sensible enough to reach out before we go under. It’s instinctive to call for help when you’re drowning.

Yes, there are exceptions. Denial, pride, the mistaken belief they can do it alone, the fear of being a burden, or the “frog in the boiling water” syndrome may stop some carers from reaching out to friends and family. My experience tells me that’s not the rule. Online caregiver support group posts and comments are replete with rants about family members (siblings in particular) who ignore repeated requests for assistance.

Unbelievably, some family members make care partnering even more difficult than it need be. Besides refusing to pitch in, they may, among other things: withhold financial support, accuse care partners of being freeloaders, sabotage a care partner’s efforts and purposely act against the best interests of both the person with dementia and the care partner. War ensues.

Positive approach to care pioneer Teepa Snow says four in five families are torn apart in the aftermath of a dementia diagnosis. That’s frightening. Especially if your family is one of the four in five statistics. Conflict adds to the stress that results in care partners getting sick and even dying before their time.

Research shows an estimated 14.7 million family caregivers assist 7.7 million older adults who live in the community rather than in institutions like nursing homes in the United States alone. Research also shows that “compared with people who didn’t offer medical support, caregivers who provided substantial assistance with health care were 79 percent more likely to experience emotional difficulty and more than twice as likely to experience physical problems themselves as well as financial difficulties.”

Care partners turn to social and government services for assistance; they are frequently disappointed. The service providers are often understaffed, difficult to access, and/or poorly designed. Furthermore, so-called “professional” staff may not have the knowledge or training to properly support dementia care partners in ways that are useful, practical and healthful. They’re lifeguards who don’t know how to swim.

Primary care partners in North America, the United Kingdom, Australia and New Zealand decry the dearth of resources available from government healthcare and social systems, which seem in many cases to be broken. Care partners know they need help. In some cases they’re screaming for it as they sink below the waves. If they don’t have the support they need, it may be because they have stopped asking out of frustration. They give up, and then they drown.

The irony is that small things can make a big difference. In a nutshell, here’s what anyone from individuals to organizations can do: find out what care partners need, and then supply it. For example, an individual might offer to:

Take the person with dementia on an outing (lunch, dinner, coffee, tea, bowling, etc. whatever they are able to still do and enjoy). Repeat as needed.

Bring over a potluck meal and eat together. Repeat.

Spend time with the person with dementia doing an activity they enjoy while the caregiver has a few hours of respite. Repeat as needed.

Stay with the person with dementia for several days to give the care partner without dementia some a break. Repeat.

One of the best things anyone can do is give care partners time away from their care situations. They need breaks. They need respite. On a larger scale, service organizations could find ways to provide respite programs that work.

Care partners want and need help. Don’t add insult to injury by telling them to ask for it, or worse, ignoring them when they do. Don’t stand on the beach and shout advice to people as they drown. Find out what they need and take action.

31 Comments

As someone has commented, you’ve really hit the nail on the head Susan. We carers just need a break sometimes, we need a weekend away, we need someone to come and take the dementia sufferer out or offer to sit with them for an afternoon. I am a carer for my partner of 15 years, we’re not married and the house we live in is his. He has 4 grown up ‘children’, none of whom are any help, don’t visit and don’t offer to take their dad out (one lives on another continent). I wanted us to move up to live nearer to my family who are currently 2+ hours drive away – 3 out of 4 of the ‘children’ (including the one living on another continent!) said no you’re not going to move our dad, the oldest has joint power of attorney with me and has said he will block any sale of our current home. So, although they offer no help three out of four of them are determined to make my life even harder, so now I’m having to see a solicitor to see what my rights are. I no longer have any goodwill to give to the 3 who are blocking the move – whereas before I would have taken my partner to visit the ones who live in this country I won’t do so now, which is a loss to my partner but I can’t do everything especially as they seem only to be judgemental over the way I look after their dad and seem oblivious to the fact that I might need some emotional support from my own family!

Anonymous, I was right where you are on February 1st of this year. It definitely is a journey.
Let yourself breathe, grieve and feel relief. Mom is now in a memory care facility that has been a Godsend for us. She is 89 and has good and bad days. She still knows me and that the family members are “safe” even though she can’t recall their names on most occasions. She has begun to have TIA events so I am sure full blown strokes are not far behind. I am learning to find the little blessings along the way. She is not in pain, suffering, or fighting us in all of this.

It can be hard to ask for help, especially when caregivers feel so vulnerable. I would love to see a culture change where it becomes standard for caregivers to choose or appoint a “list keeper” or “coordinator” (need better term). They can communicate the the family needs to their trusted “coordinator” who keeps their list. Whenever someone asks if they can help, the caregiver says, “X person is my list keeper. If you have time to help check with X and she / he can tell you what needs doing.”

Maybe they can use Lotsa Helping Hands to keep track of who is doing what. It’s a wonderful service.

How else can we change the culture surrounding caregiving?? It’s far too isolating.

people don’t offer to help
people offer to help, but then they don’t
people who genuinely want to help sometimes don’t know what to do
people who genuinely want to help sometimes don’t have the skills or capacity to do so

care partners have trouble articulating what they need help with
care partners are embarrassed about needing help
care partners don’t want to impose on others

Great piece, here. I’d like to weigh in with another issue. My father died with fronto-temporal degeneration. I’m the only child, and lived about an hour’s drive away. Mom was his primary caregiver until–WAY after it was necessary–she agreed to put him into a care facility. While I attempted to help her, she essentially refused my efforts. She thought she could do it all on her own. She was pretty damned good, but…still. How can we best handle a situation in which the primary caregiver actually refuses help that’s clearly needed?

Dan, thanks for the comment and the question, which has no simple answers.

My sense is that people refuse help in the circumstances you outline for a number of different reasons:

1) as you point out, they think they can do it on their own
2) it’s a way of demonstrating their own capacity
3) they fear their own loss of capacity
4) they want to maintain their own freedom and independence

All of which are related and intertwined.

Sometimes I think we think we know what is best for someone else when we don’t. To really understand your family situation would take lots more exploration, and I think every situation requires a unique solution.

One quote on that resonates with me goes something like this:

“We want freedom and independence for ourselves, and safety for the ones we love.”

Also, I think “disguising” support in ways that help the person retain his or her dignity, power and independence may be helpful.

Excellent piece. I am fortunate that right now I can leave my hubby (who has younger-onset Alzheimer’s) home alone while I attend to my duties at the university–classes, office hours, meetings. I’m not in the office 8-5, M-F like some folks, but that means that when I AM home, so is hubby. I want somebody to pick him up and take him to the senior center for a couple of hours. But I’ve run into people who say “you need help, you can’t do it on your own” who are completely unavailable when I ask for help. So, you have to take the kids to soccer practice? PICK UP HUBBY AND TAKE HIM WITH YOU! He’d love to watch the kiddos play. I’ll give him money for ice cream afterward. Invite us out now and then, or to your house. When you’re having a girls’ night out, send your hubby over to keep mine company–seeing your Facebook posts hurt, knowing that we used to do that stuff together.

I think one of the problems is that people feel embarrassed or at a loss with respect to how to carry on a conversation or just “be” with someone who has dementia. They don’t know how to handle the repetition, or the sometimes slightly odd behaviour, or whatever in the early stages, and the connection issue gets even more difficult in the later stages, when people living with dementia normally find it increasingly difficult to communicate using words and language.

If everyone knew better what to expect and how to react in kind and humane ways as the disease evolves, if all of that were second nature, it wouldn’t be so much of an issue.

I also know that people who live with dementia have the same needs for socialization, validation and feeling that they are loved, and that they belong, as the rest of us do – perhaps even more so.

It will take time, but I believe that by speaking out we will eventually change the perceptions around this disease and the people have it.

Also applicable to this subject: people who say to a caregiver, “Let me know if there’s anything I can do to help.”

Now it’s up to the caregiver to come up with something for that person to do. Not all caregivers are bold enough to actually provide specifics. Instead, the offerer of help needs to say something like this:

“I always make more food than I need for each dinner, I’d like to freeze my leftovers and bring them to you for you and/or your family” or “Hey, I’m running into town to do some errands tomorrow, is there anything I can get for you while I’m out or do you need a ride anywhere?” or “I’m gonna be mowing my lawn this Sunday, how about I come over and do yours as well, or if you have any yardwork/housework needing to be done, I’d really like to help. How about I come over at Noon on Sunday?”

Then it’s up to the caregiver to say YES to all those offers of help, or whichever ones would truly be a help to her.

The first offer, “Let me know if there’s anything I can do to help” is an empty offer. There’s no substance. It’s almost as if the offerer of help is saying something just as empty as “How are you today?” when they really are just using that statement as a greeting, they don’t really want to know how you’re doing, that’s just their “Hello.”

But if you put meat behind your offer of help, it shows you’re serious about actually helping.

I’m speaking as a former caregiver, and as someone who has fairly constant contact with other caregivers who are floundering and need a life preserver to get through the next day, hour, minute.

Just more proof of how amazing you are, Susan. This is a brilliant post, full of compassion and insight and real-life evidence of the challenges we caregivers face. Thanks so much for being both eloquent and passionate. People say they want to help, but when the crunch comes, how many are really willing? My siblings all had one or two weeks off over the holidays – not me, of course, caregiving for your parents is not a flex-time position. They said they would be happy to give me a day off, but one of them had to cancel at the last minute (thanks for nothing!) and the others never actually stepped up to the plate. Of course, I blame myself for not grabbing at the initial offer and insisting. I was too tired! Love & hugs all around.

Oh yes. I know exactly what you mean. How can someone not be able to schedule one night, not even ONE night in an entire year because they are “busy with other commitments?” Mind blowing. But, you know what they say, what goes around comes around. More important, it’s critical that we find a way to fix this broken “system” otherwise we’re going to have a major economic disaster on our hands. Thanks for all you do Lorrie, and love and hugs right back back at ya <3